Excessive daytime sleepiness?

[Blue_feather]

I have mild, early ssc. Does anyone else here with ssc suffer from excessive tiredness? I start getting really lethargic and sleepy by around 11 am most days. (It's the sort of sleepiness that would make it dangerous to drive), and it's driving me crazy because it makes me clumsy and my brain feels too 'lazy' to think and concentrate amongst other things.

Going out for dinner in the evening is a nightmare for me, so things have to be coordinated so l am back for bed at 7.30 /8pm.

My rheumatologist said it's the sclerodema, but she did not explain why. Since tiredness isn't really listed as a symptom, l just wondered if it is common with others with this condition (and why it happens - if known), or if it is more of an auoimmune thing generally?

Thanks for reading.

[Deby177]

i get dips throughout day push myself get put for walk regardless of weather, drink plenty try wee things in your drinks input in we 1/2 vitamin energy type tablets you dilute in drinks. For memory fog i take b12 and quality high strength magnesium bedtime. Its a struggle and balance.xx

Add to drinks

[Florence97]

I feel much the same as you, in fact it was the exhaustion that made me seek medical help. I have had Ranauds for 50 years but then about 4 years ago I became so tired I couldn’t function properly. I think this is a common symptom in ssc and also other autoimmune diseases. Sorry I can’t really help but just wanted to say your not alone. Perhaps someone will have the answer. I have tried vitamins, I was low in vit D and this was causing muscle ache. Supplements have improved this but there not a cure.

[FelixFelicis]

Hello Blue_feather,

I can’t explain exactly the cause, but it’s common with Scleroderma. That’s how I got diagnosed, I was tired, tired, tired.

I went to the GP and I said I must be dying with some hidden cancer inside me, otherwise I don’t understand what’s wrong with me.

Try to follow what your body is telling you and if possible get rest. Not everyone can be superhero! Wish you all the best ❤️

[Midgebite21]

Sorry to hear you are struggling. Fatigue is a massive problem with most autoimmune diseases unfortunately. Autoimmune initiated fatigue is totally different to standard tiredness. I have had to totally overhaul my life because of it. Left my NHS podiatry role and became self employed to manage my own hours and case load better. Going out is a logistical exercise. If it’s an evening event I rest in the afternoons. However I have had great improvements by changing my diet. I removed the majority of all ultra processed refined carbohydrates from my diet and eat predominantly low carb whole foods, bit like the Mediterranean diet. I have been eating like this for over 3 years now and my fatigue is greatly improved along with pain levels.

My rheumatologist diagnosed me with secondary fibromyalgia when I mentioned the amount of fatigue I was experiencing, she says fibromyalgia is very common in autoimmune disorders because we are constantly living in a state of pain and high anxiety due to symptoms. Diet and mindfulness has definitely helped me with my symptoms.

[stostee]

Yes, in my early days of scleroderma, I was very tired in the afternoons. Luckily, I was working part-time at that time so I was able to have a couple of hours' sleep in the afternoons to keep me going. Now, twelve years on or so, I have the odd afternoon snooze, but then I am 75!

[Blue_feather]

Many thanks for all the replies, and also the really helpful suggestions. I will be showing this thread to my husband who finds this level of tiredness hard to comprehend.

[LadyTrundle]

I agree with Midgebite21 about getting rid of all ultra high processed foods and eating wholemeal's and things from fresh/ frozen / tinned 'raw' ingredients - I always tended that way, but since going all-out for it (mediterranean style diet and controlling blood sugar)) I've noticed my fatigue is right down, as is my hunger levels while my energy and alertness is up.

I also do deep breathing exercises to both relax/ calm myself and to boost energy. Either qi gong (search for you tube videos) or this one drweil.com/videos-features/...  - suggested on one of the SRUK sessions at its conference last year.

Prof Denton explained that with this disease, because so much of the system isn't working well, and is sluggish, the body (each and every muscle for eg) just has to work so much harder to repair and regenerate, even from normal daily activity. That's why they recommend such high levels of supplements like Vic D, Vic E etc - our bodies just need much more of them to achieve the same job. I guess that could also explain the tiredness.

Also - don't discount the mental impact, especially if you've recently been diagnosed or something has changed. Anxiety or depression can both make you tired and unable to concentrate. Eg, constantly wanting to go to bed and sleep is one of the signs that depression might be setting in. So don't judge yourself, learn to accept how you are, what you CAN do and slowly build from there. Take care.